A young mum whose son was born with a range of health issues, including unformed eyes that bulge out, is desperately seeking help to make life for the blind youngster easier.
Morgan Nottigham's son, Kobi-Jai Morgan, was transferred to intensive care and put on ventilation and a feeding tube after his labour was induced in March 2022.
The tot had a large hole in his heart, a floppy larynx, and bruising around his eyes which were closed for some time. He spent a further six weeks in hospital, where it was discovered the form and structure of his eyes had not fully developed.
After turning one in March, Morgan said she is still searching for answers about his condition, although she did say Kobi, who is registered blind, is "the happiest, most crazy little boy ever", reports Wales Online.
Morgan, 24, from from Godre'r Graig, Ystalyfera, near Swansea, said: "No-one prepares you to be a parent but especially not a parent of a child with so many additional needs at the age of 22.
"Whatever life's thrown at him he's just powering through it. We've come to terms with the fact that he might not have his vision for life. But we get looks as it is. He has bulgy eyes and the bottom of his eyes scrape across his cheek. He doesn't realise while he's little but it's really sad, bless him."
The unknown condition affecting Kobi have made his eyes light-sensitive, causing him discomfort. He scratches his eyes and sometimes pushes his eyelids up towards his eyebrows when they are bothering him.
Morgan gives Kobi four different types of eye drops every day, and he has specialist transparent glasses made by Cardiff University.
Morgan, who has travelled to different parts of the UK unsuccessfully to find answers, said: "He cannot carry on with his eyes like that. There has to be someone out there that knows something."
As he has gotten older, Kobi can tell Morgan when he feels uncomfortable, and tests have shown that the youngster reacts to light and shadows.
Despite trips to Great Ormond Street Hospital in London, private specialists and visits to other hospitals, Kobi still does not have a diagnosis.
His family have started a fundraiser to take Kobi to more specialists and finally get a diagnosis.
Morgan said: "It's just about Kobi now. This is completely new to us. When he starts going to school – you know what kids are like. He has children coming up to him already and saying: 'Oh mammy he looks scary'. I want answers. I want more understanding to do more research and see what we can do to help him further and to bring more awareness.
"At the moment we have found no blind support centres, schools, or sensory classes locally. The closest specialist school is in Birmingham. We want to bring more awareness and help and support other parents going through the same thing. We're all learning."
To donate, visit Kobi's page on GoFundMe.
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